Her Heart Transplant Nixed by Blue Cross, Grace Jacques Begged for Her Life—now She's Suing

updated 06/18/1984 AT 01:00 AM EDT

originally published 06/18/1984 AT 01:00 AM EDT

With the last of her seven children packed off to college, Grace Jacques, 51, was anticipating a quiet life working and caring for her husband, Lionel, 54, permanently disabled by arthritis, at their home in Trenton, Maine. For years the Scottish-born registered nurse had suffered from a progressively degenerative heart disease, yet medication had allowed her to maintain a normal life. But her condition suddenly began to worsen and last October doctors broke the shattering news that she had only six months to live. Her only hope, they told her, was a heart transplant.

"I freaked out when I heard the transplant idea," says Jacques. "It was so outrageous. I couldn't even imagine a doctor taking out my heart and putting someone else's in." But three weeks in a hospital bed, her heart fluttering dangerously, changed her mind. "I figured it was all I had left. If I died during the operation, there was no loss. I was going to die anyway."

Certainly financial problems never worried Jacques: For 27 years she had paid Blue Cross/ Blue Shield insurance premiums to cover the risk of devastating illness. "I figured I was set," she says. "After paying premiums for so many years Blue Cross had a responsibility to me." But in December when she received her first bill for preliminary tests at Boston's Beth Israel Hospital, stamped across the bottom of the $10,000 statement were the words: "Benefits Denied by Blue Cross." Jacques discovered to her horror that her insurance policy did not cover the operation. "They were denying me the one chance I had to live," she says. "They were saying: 'Tough luck. Go home and die.' "

Grace Jacques' story is typical of hundreds of critically ill patients who have been forced over the past few years to turn desperately to the press and public officials to raise money for costly, lifesaving transplants. "Congress has become a court of last resort," says Bob Tyrer, press secretary to Maine Republican Sen. William Cohen, who lobbied for Jacques' survival. Despite the introduction in 1979 of the immunosuppressive drug cyclosporine, which has made organ transplants more successful than in the past, neither Blue Cross/ Blue Shield nor the federally funded, state-administered Medicaid program has established uniform coverage in all 50 states for heart, heart-lung or liver transplants. "The transplants are still not medically accepted," explains Charlotte Crenson of the National Blue Cross/ Blue Shield Association. "You hate to say that some people fall through the cracks, but that's the way it is."

Grace Jacques was luckier than most. Told that her medical bills could top $200,000, she and her family were mortified at first when a hospital social worker advised them to conduct a public fund-raising campaign. "It made us feel like paupers," says Jacques. "None of us had ever asked for anything in our lives." Facing a certain death sentence, however, Jacques set aside her pride and asked her sister, Mary McLean, a Nova Scotia librarian, to coordinate the lifesaving drive. McLean spent her last $125 to open a trust fund at a bank in Ellsworth, Maine and launched a media blitz about her sister's plight.

Money began pouring in. An elderly woman on Social Security pitched in $2. An anonymous benefactor mailed in a check for $20,400. When the effort sputtered out, having amassed an encouraging, yet still insufficient, $59,000, State Sen. Thomas Perkins picked up the momentum. Joined by state and federal representatives he lobbied before Maine Blue Cross and state Medicaid officials and co-sponsored legislation to force the insurance companies to underwrite transplants. "I had some constituents complain to me that if the bill for Grace goes through, insurance rates are going to go up for everyone," says Perkins. "But the fact is that in America the more fortunate have to pay for the less fortunate."

On Feb. 24, as the standoff between the politicians and the insurance companies continued, Jacques was flown to Johns Hopkins Hospital in Baltimore. "I kept turning the calendar knowing there weren't many days left," she remembers. "I was going downhill fast." Two weeks later, on March 7, Secretary of Health and Human Services Margaret Heckler approved Maine Medicaid's request to pay for the operation as a onetime exception. Immediately Johns Hopkins doctors put out a nationwide bulletin for a donor heart. Five days later Jacques was rushed into surgery, where she received the organ of a 17-year-old New Hampshire boy who had died hours earlier of head injuries suffered in a ski accident. "I'm alive because of the fact he died," says the recovering Jacques. "I hope his family gets some relief in their grief knowing I'm alive and well."

There was no such timely reprieve and happy ending for Sarah Brook-wood, a 32-year-old Massachusetts student nurse suffering from renal failure. In April 1982 she was on a plane to Pittsburgh for a liver transplant when state Medicaid officials suddenly refused to pay for the $180,000 operation. Only after her outraged father threatened to buy a full-page ad in the Boston Globe declaring then Massachusetts Gov. Edward King "responsible for my daughter's death" did King reverse the decision. Alas, it was too late and Sarah Brookwood died two months later when no suitable donor could be found. "It made me furious," says the dead woman's father, Myron Teichholtz. "These people were playing with us like we were chips on a chessboard. Today yes, tomorrow no."

In December 1982 Donje McNair, a 5-year-old boy from Chicago's poor South Side, was turned down for a liver transplant by Illinois Medicaid, which termed the procedure experimental. With no private insurance coverage, his mother on welfare and his father out of the picture, Donje was at the mercy of an inflexible bureaucracy. Even though the boy's pediatrician, Dr. Jerome Kraut, successfully petitioned the Illinois Department of Public Aid to provide the funds, Donje was by then too ill to receive the organ. The boy lapsed into a coma in March 1983, four months after the operation was recommended, and died last December. "The effort was a political success but a medical failure," says Dr. Kraut. "This country spends billions on political campaigns and military budgets but there's no money to save the life of a 5-year-old boy. The government's priorities are out of line."

The publicity aroused by the Jacques case has helped intensify the pressure on Blue Cross/ Blue Shield, which still denies funding for heart transplants in 37 states on the grounds that the operation constitutes experimental surgery. "It's a good excuse not to pay—they're just stonewalling people," charges a presidential aide who specializes in transplant appeals. The White House's Office of Agency Liaison (nicknamed the Body Shop) has helped arrange financing and transportation, on a case-by-case basis, for two-thirds of the 350 transplant patients who've turned to President Reagan as a last resort.

At the same time, President Reagan has strongly opposed Congressional legislation that would set up national uniform Medicaid eligibility standards for organ transplants. The Administration fears a repeat of federally funded expenditures for kidney dialysis and transplants, which climbed from $241 million in 1972 to $2 billion in 1983. Even so, many medical specialists see the new legislation as a necessity.

Meanwhile, Grace Jacques is recovering uneventfully at the home of a Baltimore woman who opened her house to Jacques when she first traveled to Johns Hopkins. There she follows an active regimen that includes 20 minutes of exercise bike riding, calisthenics and walking two miles each day. "I'm not an invalid anymore," she says. Since she cannot return to her $22,000-a-year nursing job (hospital germs would endanger her life), Jacques is planning to look for a new career when her three-month convalescence is complete. "I have another 15 or 20 good years of work left in me," she says. Her prognosis is encouraging. Eighty percent of heart recipients survive more than one year, and one Frenchman has lived 15 years with a transplanted heart.

Grace Jacques' financial problems have not ended with her successful surgery. Twice a day for the rest of her life, she must take liquid doses of cyclosporine. She is currently meeting the $583 monthly cost of that drug from Medicaid but expects that she'll soon have to use the $59,000 raised by her public appeal. She has also filed a $10.5 million lawsuit against Blue Cross/ Blue Shield of Maine for failing to pay for her operation, and is talking of writing a book and venturing on the lecture circuit to draw attention to the plight of other transplant patients confronting the money-or-your-life crisis. "I think some adverse publicity would do the insurance companies some good," says Jacques, who has seen four more state Blue Cross/ Blue Shield Associations, covering 1.2 million people, extend their coverage to transplants since her surgery. "Otherwise the next patient is going to come along and have to fight the same battles I did. And not everyone may be so lucky."

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